I’ve not been sleeping well this weekend.  Vince’s party kept me up late on Friday night.  Saturday I had to get up at 5 am to go to clinical which lasted until 5 pm.  Then I went out to dinner with a new Rett mom.  Those dinners are tough because I gotta go back in time (exactly 10 years now) and remember how terrible the beginning years were to re-understand what to say her.  And I see in this other woman I don’t know physically embody my intangible memory of who I was then.  This did not lead to a peaceful night’s sleep.

I’ve been having trouble finding books to read, but I’ve settled on “A Little Life”.  I told Jeremy that it was beautifully written and he said – what’s it about? – and I answered – oh, uh, child sexual/physical abuse.  (Jeremy’s like – why Doris, why?  what’s with depressing stories? … oh well.)  One of the central characters in the story has a typically developing child who is diagnosed with an incurable, progressive neurodegenerative disease at age 4 and dies about a year later…

“I admired how she knew, well before I did, that the point of a child is not what you hope he will accomplish in your name but the pleasure that he will bring you, whatever form it comes in, even it if is a form that is barely recognizable as pleasure at all – and, more important, the pleasure you will be privileged to bring him.  For the rest of Jacob’s life, I lagged one step behind Lisel: I kept dreaming he would get better, that he would return to what he had been; she, however, thought only about the life he could have given the current realities of his situation.  Maybe he could go to a special school.  Okay, he couldn’t go to school at all, but maybe he could be in a playgroup.  Okay, he wouldn’t be able to be in a playgroup, but maybe he would be able to live a long life anyway.  Okay, he wouldn’t live a long life, but maybe he could live a short happy life.  Okay, he couldn’t live a short happy life, but maybe he could live a short life with dignity: we could give him that, and she would hope for nothing else for him.”

Leave a Reply